December 9, 2016

Force-feeding, or life-saving?

It is a week of well earned congratulations and disappointment, and both around the law.

Congratulations are due each and every but especially a few for the passage of The 21st Century Cures and Mental Health Reform Package in the US Congress. Oh, the people, the work, the patience, the skill, the strategic wisdom, and the WORK that went into getting eating disorders included in that bill, and passed. I've been watching and at times involved with the work and anyone who cares about eating disorders owes an enormous debt to those who did not give up, did not lose sight of the goals. Those who suffered any number of setbacks and disappointments and KEPT GOING. And it matters. It really matters. Thank you to the organizations, especially the Eating Disorders Coalition, which itself represents organizations -- like F.E.A.S.T. -- who stood for all of us and got this done. It's a good week for mental health, and we needed it.

Another story which may seem to be about one person is actually important to countless others. A woman in New Jersey suffering from mental illness expressed the desire to stop being saved. It isn't uncommon to hear this, and countless families and treatment teams have been faced with the question of whether continuing to distress the patient is compassionate or irresponsible. So the decision by a judge to agree with the petition not to be "force-fed" is hitting many in the eating disorder world hard. Because we all know how agonizing treatment can be. And we all want to offer solace. And sometimes mental illness can seem so intractable and the medical effects so dire.

But many of us see this decision as a grave misunderstanding of what anorexia nervosa is, what treatment is, and what our role as loved ones as treatment providers can be. I wrote about this in a Huffington Post piece this week, and talk about it in the latest episode of New Plates. If you, too, care about this, make sure to be a voice saying so.


http://www.huffingtonpost.com/entry/there-is-no-such-thing-as-late-terminal-anorexia-nervosa_us_5849c4e9e4b07d4bc0fa2605

I hear many people say "no one cares about eating disorders." Well the success in the US Congress is a triumph for our voices being heard. The case in New Jersey is one where we can choose to speak or be part of the silent assent.

Listen now:

1 comment:

  1. I have been in two minds about being force-fed - when I was more unwell, it might have saved my life but it was a living hell. The practices used on me were unnecessarily cruel and there was little compassion - just disgust that I was such a deviant that I refused to keep myself alive and they had to go to the trouble of force feeding. In addition to this, they offered me no therapy. My hospital stays were all weight-gain based, all feeding based - nothing to actually help with the ED, and I was always released back in the community very underweight and not having even practiced eating by myself to maintain the newly gained weight. Unsurprisingly, I always relapsed, and always became much sicker - I began to realise that the force-feeding was exacerbating the situation as my body lost weight far more quickly (with greater medical ramifications) than had I been left alone in the first place. During these years I went before mental health tribunals many times and begged them to stop it and let me die, in my words, they were beating a dead horse.

    But on the other hand, I am alive and light years better today. They kept me alive until I got to a point where I was so sick of the abuse I went through at the hospital's hands, so sick of having no freedom, and so determined to not end up back in there for more abuse, that I finally hung onto the weight I gained instead of lost it. Not only that, but I researched and found that because they had been leaving me at below BMI 14 every time they discharged me, my brain had no chance against ED. This lead to me gaining the courage to despite ED, despite no support from the hospital to do so (they actually said me going to a higher weight was a waste of their time!), I went to a slightly higher weight and stayed there. This was enough to turn SO MANY things around, and from there, I slowly kept gaining health and life milestones.

    So force-feeding kept me alive, but just as much, it destroyed me. My point is, if it is to be a practice (and it should, because for years I had no mental capacity to fight the ED alone and I am very grateful to be alive today, this is the case for most people very sick with ED - at the time, they have no mental capacity against it) - it MUST be done kindly, it MUST be done in a medically safe way, and they MUST NOT leave people still very underweight. They MUST still provide them with therapeutic help and they MUST make sure the patient is able to eat (or at least take in enough nutrition independently) before they go home. Otherwise it is such a waste of time and simply contributing to the person's decline.

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